Guest Post: The Difference Between Diagnosis As A Child And An Adult

My lovely friend Natalie who blogs at The Spoonie Mummy and I have done a post swap you can read mine here. I was diagnosed ad a child too so I can relate to pretty much all of what Natalie talks about. What are your thoughts?

Me and my partner were chatting a couple of weeks ago and he mentioned missing something from before he became poorly. I said I didn’t know as I had been poorly since being a baby and therefore had always had to do it that way. It got me thinking. Would I prefer to have been able to have certain experiences and a ‘go at life’ before getting poorly? How would it feel to have life changed in your late teens or early adulthood with a diagnosis of a chronic illness? Am I better off for having been poorly since being a baby and knowing no different? I don’t know what I am missing as I have never had experiences without considering my illnesses.

I believe there are pros and cons for both. I have never known any different whereas someone who gets poorly in their late teens or during adulthood can have their life turned upside down. They may not be able to do things they were once able to, may have to change jobs, leave college or university, stop participating in their hobbies depending on how their illness affects them. Routine changes as they start to incorporate hospital appointments into their lives. As I have always been poorly, when I was making decisions about my career and employment, it was always something I had to factor in. Some things you can’t predict, an example of this is me needing to leave college in my second year due to a particularly bad bout of ill health, but on the whole I only try and take on what I think I can manage. Whereas Ste, my boyfriend, had to give up his rugby career when he was diagnosed with Crohns and had his ileostomy formed. I know this devastates him to this day, that a glowing career was cut short and it was something he so loved to do. Some people dream of having a family and then find out that they are unable to have children due to their condition. My doctor’s were always honest and open with me and I was aware that although it would need to be carefully planned and overseen by my team, pregnancy was a possibility.

Mental health problems often affect those with chronic conditions. I never suffered with any issues until my diagnosis with Crohns and personal problems started affecting me in my late twenties. I was really lucky to have an amazing health team growing up. I also had a great advocate in my mum, who always wanted me to accept every opportunity possible and not let my health get in the way of what I wanted. I do believe that although I have some lovely consultants now, you do not get the same support as an adult, even as a regular patient. I think that is why, when you are diagnosed later in life, you tend to suffer more mentally, as you lack a lot of the caring and support side that you get so much more of from the Children’s Hospitals. I am sure people have different experiences to me but I am talking from general observations and from my experiences.

I think my next point ties in with the mental health opinion a little but I find that more people who are diagnosed as babies and children have a more positive outlook on life. Due to them ‘losing’ out on things they used to enjoy I feel that people who are diagnosed as they get older are definitely more pessimistic. This definitely isn’t always the case, I know many people the opposite way round, but when you are diagnosed as a child you have to fight for everything your whole life and so this becomes what you do! When you have a chronic illness you have to make a choice. You will have it for the rest of your life, you cannot change that unfortunately. So you either choose to fight and still try and live your life, or you roll over and let it beat you. Live a half life, feeling hard done by (which we all have the right to feel sometimes) and let your condition control you.

Being diagnosed so young meant a lot of my early care and medical decisions were made by my doctor’s and my mum. Luckily, my mum was excellent as I have said. Also my medical team were very good, and even though until I was 18, decisions were technically still my mum’s to make for me, they involved me in decisions about treatment options etc. I know that unfortunately, many children do not get this sort of advocacy when young, they aren’t involved in any way in decisions and nothing is discussed with them. To then be thrust into the adult hospital world, making decisions, having to understand their condition etc can be very daunting. When diagnosed as an adult you are automatically in charge of your own decisions, you are able to understand your condition and ask your own questions. I think this is a really important thing to do, as you want to be aware of all of your options when choosing treatments and choose what is right for you and your life.

My idea of ‘normal’ is very different to most other people I know. It is extremely different to those who do not suffer with chronic illnesses but it also differs from many of the people I am friends with in the Arthritis and IBD communities. My conditions have always been a factor in my life and in my decisions about almost everything I do. People who have an idea of what life was like before they were diagnosed, recognise their new life is different but are still able to form a comparison and understand those without chronic conditions better.

I believe being ill from being a baby has definitely helped make me who I am today and although sometimes I wonder about how it must feel to do certain things (randomly, I have always wanted to be able to sit crossed legged – I can’t and I think it looks super comfy!) I think I have made the most of life and continue to live happily and with purpose. It is definitely an interesting topic to think about, please comment with your thoughts on the subject and what your feelings are about it.

I blog about life as a mum, girlfriend, stepmum and woman with not one but three chronic illnesses (although that list is getting longer by the year!). You can contact me via my blog, Facebook, Twitter, Instagram and I am also on Pinterest.

One thought on “Guest Post: The Difference Between Diagnosis As A Child And An Adult

  1. Hi Stephie

    I’m 36 and was only diagnosed on 22 December 2015. I was truly gutted. I cried for the 2 days up to Christmas after diagnosis. I was then really ill from New Years Day 2016 and ended up in hospital for a week and a half by 4th January 2016. I do feel it’s probably harder being diagnosed as an adult. I’m at the angry stage now nearly 2 years down the line and I feel it’s it’s been a grieving process if that makes sense. It annoys me and frustrates me at the things that have become so much harder than they were before. In some ways it’s probably still not hit me, as I still cry when I think it’s forever and wonder how things will be in 10 or 20 years. It frustrates me so much about the lack of understanding from other people, because really most people don’t have a clue about crohn’s and colitis.

    The fatigue is a pain in the back side, as I just want to have the same energy I had before and for things to be fine, but know it isn’t going to change back. I suppose I just want things how they were and that’s no longer my life. I’m lucky that some things I still have and other things I’ve had to change and I think my determination and stubbornness is what actually gets me through life on a daily basis.

    Cheers

    Elaine

    P.S. I sent Louise a photo of my cupboard of supplement drinks for the show.

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